1. Introduction
Children with Cystic Fibrosis (CF) may experience elevated psychological
symptoms (e.g., depression, anxiety) 1-3, as well as
impairments in quality of life 4. Psychological
symptoms in children with CF pose a significant concern, as there are
deleterious associations between psychological symptoms and health
outcomes 4-5. To address these mental health concerns
and the barriers in traditional methods of mental health service
delivery (e.g., limited resources, required travel), novel forms of
service delivery (i.e., Internet-based programs) have been proposed as
being viable and effective options 6. Innovative
technology-delivered treatments for children with CF have been developed
in other areas of CF care (e.g., physiotherapy, nutrition)7-8. Despite Internet-delivered programs being
developed in other areas of CF care and in psychological programs for
family members impacted by CF 6, to date there are no
Internet-delivered mental health programs for children with CF. Prior to
designing an Internet-delivered mental health program for children with
CF, it is necessary to understand their information and service needs to
tailor services appropriately 9.
The purpose of the current study was to explore the information and
mental health service needs of children with CF from the perspective of
children with CF, their parents, and health care providers (HCPs). There
were five primary research questions: (1) What type of information about
CF do children with CF need?; (2) What challenges do children with CF
face?; (3) What types of services do children with CF need?; (4) What
are the perceived benefits/drawbacks of obtaining service via the
Internet?; and (5) What components should be included in an interactive,
Internet-delivered mental health program for children with CF?